Adv stage 4 PC PSA rising!

Just looking for some others experience ! My husband was diagnosed 12/2016 after many tests and biopsy ! First clue something wrong had a lump on flank of back! We were out of country! Did biopsy and was malignant! No PC diagnosis at that moment!

Returned to US and all pieces put together Tumor was metastasis from Prostrate cancer! PSA 1000+ my concern is PSA never lower than 40! Lupron first than 15 months later Zytiga with Predisone Exgeva for bones! PSA 12/23/19 was 98.12

11/4/19 psa 90.05 8/12/19 psa78.90. PSA 7/15/19 85.16

He is active still working no major pain areas some lower back and fatigue

Oncologist talking again Research trials we are thinking not! I have read about taking Zytiga with food which he is not doing! Do we have anything to lose by trying? Thoughts welcome

Islandgirl51

[Tall_Allen]

Unless the issue is affordability, take the full dose of Zytiga without food. Here is what we know about chemohormonal sequencing:

pcnrv.blogspot.com/2019/12/...

After Zytiga, should also be considering Xofigo and Provenge. Why have you ruled out clinical trials?

[Hidden in reply to Tall_Allen]

We met with the Doctor at the Research Center (12/2018) and after he explained the precautions and side effects we said no! He actually told Oncolgist he agreed with our decision! Husband still working trying to finish probably his last project! He wants quality over quantity !

[Tall_Allen in reply to Hidden]

There are hundreds of clinical trials - which one did you say no to? Most therapies improve quality of life.

[Hidden in reply to Tall_Allen]

I am not sure of the name! We were so shocked at what he was saying its like a blur! My husband would have had to be in hospital for 3 days to watch for side effects! Didnt sound like “good quality” of life to start with! We are in Nashville !

[Tall_Allen in reply to Hidden]

In Nashville, you have Vanderbilt, which is one of the top institutions in the US. They have many clinical trials running.

It is a good idea to take notes during your meetings with oncologists.

[Hidden in reply to Tall_Allen]

Yes I normally do! But this was like a “reality check” for both of us!

[Tall_Allen in reply to Hidden]

What was a reality check?

[Hidden in reply to Tall_Allen]

We had never had any experience with”cancer” before! The diagnosis its self was a shock ! Told no cure only treatment! So after the treatment started then referred to “Research Doctor” for Trials we were thinking this is what happens at the end of normal treatment! We had a friend who had been battling Pancreatic cancer had a new major surgery then more treatments and she had been referred to this Dr and told to late!

Just a awaking to reality Cancer yes it’s real

[LearnAll in reply to Hidden]

please read gregg57 reply again. This is the best advice . I agree with docetaxel ..it might drop his PSA to less than 1 and that will prolong his life and improve quality of life too.

Docetaxel is much milder type of chemo.

[Hidden in reply to LearnAll]

I will research it and mention to Oncologist! He is fine with me and the research! This is starting husbands 4 th year on Lupron does that make any difference or the Zytiga about One 1/2 years!

[LearnAll in reply to Hidden]

Bella, there are 2 types of prostate cancer cells..first one called Adrogen dependent and the second type called Androgen independent. After being long time on Lupron..most androgen dependent ones are dead but androgen independent remains alive and might grow.

We need to kill those androgen independent cancer cells and Docetaxel chemo does that..kills both types of cells and leading to very low PSA.

[Hidden in reply to LearnAll]

Yes I figured that was what is happening! Last scans showed no change! But this rise of PSA even though I/we know is not all that oncologist looks at! Drives me crazy! Husband not a complainer so never really know how he is feeing! Hard worker Oncologist calls him “stoic” thanks for the info! I feel better have info!

‘

[podsart in reply to Tall_Allen]

I submitted my email address to the “follow by email” link to this great newsletter once before but never got anything. I tried just now and the system says I am already registered. Am I supposed to receive notices from it or emailed links? What have I done wrong in my submittal?

[Tall_Allen in reply to podsart]

Did you check your spam folder? Others told me it works. I'm going to re-do the site this year.

[podsart in reply to Tall_Allen]

thanks

checked, not in spam or trash ..

[Tall_Allen in reply to podsart]

Sorry - I'll try to get it fixed this month.

[podsart in reply to Tall_Allen]

great, appreciated

[Hidden]

Taking Zytiga with food helps the body abosrb more of the drug, but if he was already taking he full dose without food, he was getting an adequate dose. In that case the problem is resistance to the drug.

As far as I can see from his history, he hasn't had Docetaxel chemotherapy. If I were in this situation, I'd be starting Docetaxel chemotherapy as soon as possible, especially with a PSA that high and progression.

I've been through 6 cycles of it already and it's quite tolerable for most patients. Chemotherapy for prostate cancer is nothing to be afraid of.

After chemotherapy, he could try another anti-androgen treatment to see if that works.

That's what I would do, but you can discuss it with his doctor.

Just want to say one thing about quality of life. Cancer destroys quality of life a lot faster than side effects from effective treatments. I have experience with this. The best quality of life comes from effectively treating the cancer for as long as you can.

[Hidden in reply to Hidden]

Thanks! His job is out of the country so he coms back once a month for labs and whatever else is due! I am praying in next few months he just stops for many reasons but most of all his health We see Oncolgist Feb 24 in meantime he will be having Full body scan and MRI!

[larry_dammit]

As I understand it you still have chemo as a choice , has he had a current bone and body scan to see where the cancer is and if it’s spreading.

[Hidden in reply to larry_dammit]

Those tests order for Beginning of February and MRI Feb 24 same day as he sees Oncologist to go over it all! last year when rise same tests showed nothing new! Feel like fighting an “invisible cancer” which most likely we are!

[larry_dammit]

Know what your saying, my oncologist orders a set of scans every 6 months here. Stage 4 August of 16. Last time 5 1/2 months ago he said I was stable, not getting worse but not getting better. Tests the 12th and shots and consulting on the 13th. Hoping for the same thing. Worried I get out and do to much and hurt the ribs pretty bad

[Hidden in reply to larry_dammit]

Do you have mets anywhere

[larry_dammit]

Spine, ribs and had them in lymph nodes but the lymph nodes have gone away

[Annie1373]

It’s standard to take 1000 mg Zytiga without food .Although some researches indicates that blood concentration will be multiplied up 10 times by taking Zytiga with food but at last there’s no significant differences in response ( by evaluating PSA) .I don’t know how old your husband is but chemotherapy will also help him so much

[Hidden in reply to Annie1373]

Thank you! At the moment he doesn't want to do Chemo! Will see results of the tests in February and go from there😉Its his decision and I will support him

[Alicat1]

Hi Bella. Sorry about your husband and strength to you both. When you say "lump on flank of back” where was it that the cancer had metasatised to?

[Grumpyswife]

Taking Zytiga with food did not work for my husband and his PSA went up instead of down. He went back to full dose for the last month and we are awaiting the PSA results from yesterday. Also, chemo doesn't work for everyone which is the same for every other treatment suggested on here. You/he should do what you think is right and consider clinical trials even just for the monitoring your husband would receive.

[Hidden in reply to Grumpyswife]

Thank you for info! Everyone is different so it seems you need to consider every treatment very carefully! I am doing as much “fact gathering” as I can to be able to have a informed conversation with our Oncologist in February! Hope your results are better for you this time!

[monte1111]

Did the oncologist suggest chemo? If the Zytiga is not working I think dr. would suggest chemo before clinical trials? You said you were not considering chemo. Time to step back and reassess? If it is because chemo interferes with job, I think longer life is better than any job. Just trying to be helpful, don't know your thoughts or reasons. Best of wishes.